The Double Edged Sword Analogy - By A Cancer Survivor

MY VERY OWN DOUBLE EDGED SWORD - HOW LUCKY I AM?

I wrote this quote a while ago to sum up my feelings as a blood cancer survivor.

Writing has been a great therapy for me relieving bottled up stress by putting my thoughts down on to 'paper' and out of my over active mind.  Both rewarding and cathartic and the realisation of a childhood dream.  This post explains what is behind it.

When I planned this I'd found myself using the phrase 'Double Edged Sword' a lot when describing my life since being diagnosed with Acute Leukaemia.  Much as it was and still is a devastating diagnosis there are many positive things that have come into my life now. 

I've been asked many times how my life has changed since and I've always tried to put together an answer that would sum it up but actually for me its hard to define.  The following may help you understand my thoughts;

Here are the negatives;

• Long terms effects of chemotherapy 
• Fear of secondary cancer due to intense chemo
• Loss of my job
• Loss of confidence in my body and health
• Issues with my balance leading to embarrassing moments
• Extreme fatigue & muscle waste
• Sleep disturbance
• Cognitive brain problems
• Relationship changes
• My changed image, hair loss
• PTSD and GAD
• Financial impact
• My daughter's emotions
• Friendship changes

But then all of the wonderful positives;

• New friendships
• Renewing old, lost friendships
• Inner strength and pride that I never had before
• Clarity on my life and what it really means to me
• Perspective, its a relief to understand what is truly important
• Guilt free happiness
• Volunteering as a Charity Ambassador and fundraising 
• Finding out how rewarding helping others is when I hear the impact my support has had on their life
• The confidence to write...a childhood dream of mine
• Touching gestures of kindness and generosity that I will cherish forever
• Educating myself and achieving new goals
• Inspiring others and being inspired

I was chatting to a fellow AML survivor recently and as we were sharing our experiences she proceeded to tell me that overall she is happier with her life now, since her diagnosis.  Even though she is constantly living with the fear of relapse overall her life is better.  Hearing this was great because finally there was someone else with similar thoughts to me. It's not something I've really admitted to many people because it's a strange conclusion to come to after something so life changing. But it seems that after being given a second chance at life everything has become much clearer to me which is a wonderful feeling, something I'd struggled to see before. At times I would have this fear that my life would pass by before I'd figured it all out, what my legacy should be.  Now I know what I want to do, need to do and I've achieved so much in the past 18 months. 

I looked up the definition of this Idiom;

• Collins English Dictionary - Something has negative effects as well as positive effects.
• Oxford Dictionary - A situation or course of action having both positive and negative effects.

This is why I often say 'Double Edged Sword'

Words & Life Quotes to Inspire ... #amwriting

I have always loved reading quotes and often go to them when I am feeling a little low and in need of inspiration.  Here are some written by me...I find it extremely therapeutic and my go to stress buster.

Mine are written from my life experiences and being a Leukaemia survivor, Mum, wife, friend and obsessive with a varied career background there is quite a lot for me to draw from...enjoy

Hope you have enjoyed these and at least felt a little inspired or less alone...please leave a comment as I would love to hear from you...Butterfly

The Reality of Chemo Hair loss - 'It Just Isn't Me'

I've been prompted to write this post after being asked to talk on BBC Radio Lincolnshire's Melvyn Prior show about cancer and hair loss.  I also tuned into the Jeremy Vine show on BBC Radio Two as they too were discussing it.

When Victoria Derbyshire took her wig off in her video diary my mind flashed back to my experience.  As I was in hospital for 6 months during my Leukaemia treatment I never felt the need for a wig so opted for the chemo hats.  They became my shield to hide behind so when I first went out without one showing the world my new extremely short hair I felt naked and exposed.  Even though I am not on the TV like Victoria Derbyshire, going out in my local community and doing the school run was very daunting. Victoria is very brave sharing this moment online in front of thousands of viewers.  When she said 'this just isn't me' immediately I felt empathy with her and her words pretty much summed it up for me. 

I've decided to be brave and share this photo of me, it's one I don't even look at myself as it's pretty awful.

This was what was left of my hair, not a good moment,
just before my lovely hairdresser shaved it off.

Hair loss from chemotherapy may to some seem like a necessary part of survival and of course it is but equally feeling bad about it is not about vanity either.  At first I hid my bald head from my daughter because I didn't want to scare her and I will never forget that moment when she first saw it (which was by accident). It was one of many tough moments but she was very brave and kind saying 'it's ok Mummy...I'm ok Mummy.' When it first started to grow back she wouldn't touch it for a long while.   

My head would get so sweaty that I needed a towel on my pillow, I'm not sure if this was due to having no hair or my treatment but it was quite embarrassing, especially while I was in hospital!  When I was at home I would often have to wipe my head with tissue...I remember thinking 'this is what men who are bald must have to do'.  I realise this may sound a little bad to admit but it's what crossed my mind and as a woman you don't expect to experience this (sorry bald men, no offence meant).

Before my diagnosis

My hairdresser cut my hair off
before it started to fall out

With my best hat on!

In hospital with my first head scarf

One of the most upsetting things which has really affected my confidence in the beginning was that people didn't recognise me.  I'm not talking about people you haven't seen in years but those who saw me pretty much everyday before my diagnosis.  I would have to stop them and re-introduce myself however, after a while I wouldn't bother because I was afraid that they still wouldn't remember me.  Irrational I know but we've all had that moment when someone looks at you blankly, even once you have explained how you know them so when this happens on a daily basis you get paranoid.  I still have this fear now when I see people in the street even though most are used to my new look.

Then there was the period where it was very short, like a crew cut and I felt really unfeminine.  I realised that my hair had been what had made me feel like a woman and that I had enjoyed using it to express myself.  Having long hair had meant I could change my 'style' depending on how I was feeling, giving me power and confidence.  If I was feeling low I could spend time styling my hair in a way that would lift my mood and put a smile on my face. A lot of women know how special you feel when you have your hair put up at the hair salon ready for a special occasion, like a mask, changing your persona for a night.  Of course if you like to have your hair really short, or have decided to have a drastic make over that is a different thing altogether. You've made that decision and  I am not saying that short hair equals unfeminine, in fact I've always admired short styles on women like Halle Berry and Charlize Theron, they are two of the most beautiful women in my opinion.  

When I look back at pictures of myself before my diagnosis I can't relate to that person anymore, she's lost, seemingly forever.  Although I feel close to that person I just can't quite find her, I find this very unsettling and I'm still grieving for her.   One of the many emotions I've felt from my hair loss is feeling lost because I don't even recognise myself.  

One time I saw myself in the mirror and thought to myself 'yeah, you definitely look like you have cancer.'

Thinking back to the two hours my husband and mum spent combing out my matted hair in hospital is upsetting.  I had been gravely ill for a few weeks so as my hair had been falling out I'd been bed bound therefore not showering or combing my hair. I can still remember how much it hurt and see the massive pile of hair on the bed next to me.  They were both silent, trying to be as gentle as they could, trying not to break down while I just wanted it to be over. You could have heard a pin drop in that hospital room.  I didn't want to look in the mirror after because I was scared of what I would see, but I did and I gritted my teeth.

I've experienced lots of milestones with my hair regrowth which to many may seem minor but as they happened represented part of my recovery; like the first time I washed my hair with shampoo (I'd just been using baby wipes to clean my head for months!), the first time I felt the wind blow my hair, the first time I could get a clip in it, the first time I could wrap a towel around it, used my hairdryer again, and had it trimmed, felt it touching my face again.  Things I took for granted before.

Over the past 18 months since finishing my treatment I have spoken to many fellow cancer fighters and survivors and one of the most common phrases I hear is 'it's about control'.  For the first time in your life you have no control over your hair.  Often it grows back differently, curly, thinner, thicker or a different colour.  I thought I would grow mine back to the length it was before but it suddenly dawned on me one day that it would take 3 or 4 years and this never crossed my mind when I first lost my hair, all I could think of was getting back to the old me. That is something I now know will never happen either will my identity or personality.  The 'new normal' is something I am still trying to understand and some to terms with.

I could write so much more but am conscious of this post being too long!  I would love to hear your thoughts or if you've felt the same as me so please leave your comments below...many thanks!

Actually I have been 'Hit by a Bus' #Leukaemia

As many cancer fighters, survivors and people fighting other life threatening illnesses will know some comments, phrases or misguided efforts at making you feel better actually have the opposite effect.  Some now aren't really applicable anymore, this is yet another 'after effect' of cancer...finding phrases and sayings either really resonate, make you want to scream or laugh at the irony.

One of these comments is the popular 'any of us could get hit by a bus tomorrow' ... While I really appreciate that this is meant in the most supportive and compassionate way it actually doesn't help and often leaves me feeling more alone. Before I wrote this I did speak to my fellow cancer friends about it to get a feel for whether or not I was being oversensitive.  You see its actually not applicable to us now as we have been hit by that proverbial bus!  There are other comments that are also unhelpful but I will write about them in a different post.

Someone used this phrase the other day and as I watched her walk away all I can think was...'don't you see I have been hit by that bus...don't you get it...it's alright for you because you are walking around thinking it will never happen to you...like I used to too.  You have no idea that what you just said makes me want to scream 'It's not applicable to me anymore...can't you see I have been hit!'

Whenever you cross a road do you not look and make your own decision on whether or not it is safe to cross?  Did I make the choice to develop cancer?  When you are going about your daily lives you a certain amount of control over your own safety...when crossing a road, standing at a bus stop or driving your car.  You can take extra care, look twice or avoid trouble spots.  I was in London the other day with friends and when it came to crossing a road funnily enough a bus came speeding along so we stepped back and I actually put my hand on my friends arm to make sure she was out of harms way...it's a natural instinct.

But when it comes to the 'cancer bus' no amount of being careful or a friends hand on my arm would have changed a thing.  I had no control over what my own body did to me, how it turned against me, my own bone marrow.  BONE MARROW FAILURE, yes 90% of it was not functioning and without healthy blood cells your body fails, yours organs fail...life fails.  Not only that but these dangerous cancer cells were dispersed around my body via my bloodstream, normally a vital but, potentially spreading the cancer all over my body, using each and every vein to infect you.

Also this 'bus' is likely to come and hit me again...how many times have you heard of someone being hit by a bus twice?  I live in fear of being hit again and am constantly looking over my shoulder waiting for its impact.

When offering words of comfort to someone whose been diagnosed by cancer perhaps think carefully before saying 'Of course any of us could be hit by a bus at any time.'  Don't try to generalise it, to make it sound like it doesn't matter, it was inevitable anyway and that being so makes it ok that you've been hit by a life threatening, life changing disease.

So where did this phrase come from anyway?? Here's what I found out;

A generic rather than literal example of misfortune, verbal shorthand to indicate that none of us know our future, that a catastrophe is merely an involuntary act of fate.  Casually used to refer to an unexpected death, illness, debilitating injury yet without making it seem grim.

According to Wikipedia it was first used in the novel 'The Secret Agent' by Joseph Conrad; "But just try to understand that it was a pure accident; as much as if he had been run over by a bus while crossing the street."

This term is also used a lot in business management meaning that there must always be a contingency plan in case someone in the team is taken ill, leaves, etc unexpectedly.  And the definition from the newly popular Urban Dictionary is 'Used instead of the word Stupid' For example; 'OMG this mobile is so getting hit by a bus.' when said mobile isn't working properly.

Thanks for taking time out of your day to read this...love Butterfly